Dataset Information

Treatment Preferences at the End-of-Life in Parkinson's Disease Patients.

ABSTRACT:

Background

Few studies have been performed on palliative care in Parkinson's disease (PD). This study was undertaken to understand treatment preferences of PD patients toward end-of-life care.

Methods

A questionnaire modified from the Willingness to Accept Life-Sustaining Treatment instrument was administered to participants. Four different scenarios based on the burden of care and outcome of the treatment were presented in detail to obtain decisions for end-of-life care. The responses in each scenario were compared between PD patients and controls. Further analyses were performed to identify factors that influenced treatment preferences among PD patients.

Results

In total, 136 PD patients and 60 controls were recruited. Parkinson's disease patients and controls were demographically similar, except that PD patients had more previous hospital admissions (P = 0.0195). Parkinson's disease patients were more likely to opt for high-burden care with poor outcome than controls (odds ratio [OR] = 2.11, P = 0.04).In the subgroup analysis for PD patients, the factors that influenced treatment preference toward end-of-life care were belief in religion (OR: 7.43, 95% confidence interval:1.97-28.07), higher Unified Parkinson's Disease Rating Scale (UPDRS) motor score (2.51, 1.14-5.50) in scenario B; belief in religion (6.93, 2.23-21.43), married patients (6.93, 2.23-21.43) in scenario C; and Chinese patients (0.29, 0.10-0.79), better PD knowledge (0.37, 0.17-0.80), and higher UPDRS motor scores (3.05, 1.35-6.9) in scenario D.

Conclusion

Parkinson's disease patients were more likely to agree to high-burden care with a poor outcome compared to controls. Among PD patients, race, marital status, religious status, knowledge about PD, and severity of motor impairment significantly influenced their end-of-life treatment preferences.

SUBMITTER: Li W

PROVIDER: S-EPMC6178631 | biostudies-literature | 2016 Sep-Oct

REPOSITORIES: biostudies-literature

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Publications

Treatment Preferences at the End-of-Life in Parkinson's Disease Patients.

Li Wei W Ng Hwee Lan HL Li Wenyun W Piano Anthony N AN Karim Shireen Abdul SA Tay Kay Yaw KY Au Wing Lok WL Tan Louis Cs LC

Movement disorders clinical practice 20160109 5

<h4>Background</h4>Few studies have been performed on palliative care in Parkinson's disease (PD). This study was undertaken to understand treatment preferences of PD patients toward end-of-life care.<h4>Methods</h4>A questionnaire modified from the Willingness to Accept Life-Sustaining Treatment instrument was administered to participants. Four different scenarios based on the burden of care and outcome of the treatment were presented in detail to obtain decisions for end-of-life care. The resp ...[more]

PMID: 30363514

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Project description:BackgroundStudies using local samples suggest that racial minorities anticipate a greater preference for life-sustaining treatment when faced with a terminal illness. These studies are limited by size, representation, and insufficient exploration of sociocultural covariables.ObjectiveTo explore racial and ethnic differences in concerns and preferences for medical treatment at the end of life in a national sample, adjusting for sociocultural covariables.DesignDual-language (English/Spanish), mixed-mode (telephone/mail) survey.ParticipantsA total of 2,847 of 4,610 eligible community-dwelling Medicare beneficiaries age 65 or older on July 1, 2003 (62% response).MeasurementsDemographics, education, financial strain, health status, social networks, perceptions of health-care access, quality, and the effectiveness of mechanical ventilation (MV), and concerns and preferences for medical care in the event the respondent had a serious illness and less than 1 year to live.ResultsRespondents included 85% non-Hispanic whites, 4.6% Hispanics, 6.3% blacks, and 4.2% "other" race/ethnicity. More blacks (18%) and Hispanics (15%) than whites (8%) want to die in the hospital; more blacks (28%) and Hispanics (21.2%) than whites (15%) want life-prolonging drugs that make them feel worse all the time; fewer blacks (49%) and Hispanics (57%) than whites (74%) want potentially life-shortening palliative drugs, and more blacks (24%, 36%) and Hispanics (22%, 29%) than whites (13%, 21%) want MV for life extension of 1 week or 1 month, respectively. In multivariable analyses, sociodemographic variables, preference for specialists, and an overly optimistic belief in the effectiveness of MV explained some of the greater preferences for life-sustaining drugs and mechanical ventilation among non-whites. Black race remained an independent predictor of concern about receiving too much treatment [adjusted OR = 2.0 (1.5-2.7)], preference for dying in a hospital [AOR = 2.3 (1.6-3.2)], receiving life-prolonging drugs [1.9 (1.4-2.6)], MV for 1 week [2.3 (1.6-3.3)] or 1 month's [2.1 (1.6-2.9)] life extension, and a preference not to take potentially life-shortening palliative drugs [0.4 (0.3-0.5)]. Hispanic ethnicity remained an independent predictor of preference for dying in the hospital [2.2 (1.3-4.0)] and against potentially life-shortening palliative drugs [0.5 (0.3-0.7)].ConclusionsGreater preference for intensive treatment near the end of life among minority elders is not explained fully by confounding sociocultural variables. Still, most Medicare beneficiaries in all race/ethnic groups prefer not to die in the hospital, to receive life-prolonging drugs that make them feel worse all the time, or to receive MV.

Project description:AimsEarly engagement in advance care planning (ACP) is recommended in heart failure (HF) management. We investigated the preferences of patients with HF regarding ACP and end-of-life (EOL) care, including their desired timing of ACP initiation.Methods and resultsData were collected using a 92-item questionnaire survey, which was directly distributed to hospitalized patients by dedicated physicians and nurses in a university hospital setting. One-hundred eighty-seven patients agreed to participate (response rate: 92.6%), and 171 completed the survey [valid response rate: 84.7%; men: 67.3%; median age: 73.0 (63.0-81.0) years]. Logistic regression analyses were conducted to identify the predictors of positive attitudes towards ACP. Most recognized ACP as important for their care (n = 127, 74.3%), 48.1% stated that ACP should be initiated after repeated HF hospitalizations in the past year, and 29.0% preferred ACP to begin during the first or second HF hospitalization. Only 21.7% of patients had previously engaged in ACP conversations during HF management. Positive attitudes towards ACP were associated with lower depressive symptoms [two-item Patient Health Questionnaire; odds ratio (OR): 0.75, 95% confidence interval (CI): 0.61-0.92, P-value: 0.006], marriage (OR: 2.53, 95% CI: 1.25-5.12, P-value: 0.010), and a high educational level (OR: 2.66, 95% CI: 1.28-5.56, P-value: 0.009), but not with severity of HF (represented by Seattle Heart Failure Model risk score). Regarding EOL care, while 'Saying what one wants to tell loved ones' (83.4%), 'Dying a natural death' (81.8%), and 'Being able to stay at one's favorite place' (75.6%) were the three most important factors for patients, preferences for 'Receiving sufficient treatment' (56.5%) and 'Knowing what to expect about future condition' (50.3%) were divergent.ConclusionsDespite patients' preferences for ACP conversations, there was a discrepancy between preference and engagement in ACP among patients hospitalized for HF. Patients' preferences regarding EOL care may differ; physicians need to consider the appropriate ACP approach to align with patients' care goals.

Dataset Information

Treatment Preferences at the End-of-Life in Parkinson's Disease Patients.

Background

Methods

Results

Conclusion

Publications

Treatment Preferences at the End-of-Life in Parkinson's Disease Patients.

Similar Datasets

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